The meaning of life

A fight against ALS becomes universal in 'So Much So Fast'

By Ty Burr, Globe Staff | October 27, 2006

The new documentary "So Much So Fast" is a local story that keeps expanding until it seems to fill the universe. As specific as the side streets and dog parks of Newton Highlands, the film addresses the larger issues of family bonds -- where one brother's strength becomes another's heroic craziness -- and the meaning of human life itself. It is harrowing, heartbreaking, cheering, and unforgettable.

Married Boston-area directors Steven Ascher and Jeanne Jordan -- they picked up an Oscar nomination for their 1995 documentary "Troublesome Creek" -- started filming the Heywood family of Newton in 1998, after 29-year-old Stephen Heywood was diagnosed with ALS, the degenerative neurological disorder also known as Lou Gehrig's disease. The topic was personal: Jordan's mother had recently died from ALS, the family watching helplessly as she wasted away from a killer for which there were no drugs or treatment.

The Heywoods are the sort of clan that, faced with hopelessness, prefer to invest in false hope and work to make it real. They're strapping young men, mostly, for whom the traffic lights have always been green: Stephen, a carpenter and the family rebel; his brothers, Jamie and Ben; their parents, John and Peggy. In the words of a longtime friend, the Heywoods have "never really known trouble."

Ninety percent of ALS sufferers are dead within five years, and Stephen, rangy and witty, responds to his diagnosis by doing as much as he can while he can. As Ascher and Jordan settle in for the long haul, he marries his girlfriend ("What will people say? Doesn't matter," is her cheerful comment), has a son, oversees the rebuilding of a carriage house on his parents' land, getting his hands dirty until they can no longer measure and cut the boards on their own. "Want to take a rest?" asks one of his workers. "I don't have much time," Stephen responds.

Over the course of "So Much So Fast," he recedes slightly into the background as his brother Jamie's efforts to find a cure take center stage. A mechanical engineer, Jamie quits his job to set up a foundation and raise funds; he establishes a research laboratory and stocks it with local geniuses and an awful lot of mice. The latter are bred with the human ALS gene; they die within five months, and it isn't pleasant to see.

Nor is the increasing desperation with which Jamie carries on his crusade. He calls it "guerrilla research" and tests drugs that have been approved for other diseases; he makes his data public and dispenses with peer review. And why shouldn't he, since his brother's dying? The medical establishment reacts with the distaste reserved for a bum in a church. "He's either the next Einstein or a complete idiot," says someone about Jamie. Jamie's own analysis: "I am aware that I am insane."

The fortunes of the foundation wax and wane, Jamie's marriage comes unglued, Stephen and Wendy's son grows, and Stephen's body slowly sinks into a swamp of misfiring nerve ends. This is dreadful to witness, but it has its dark moments of humor. Each step down into the disease -- Stephen's inability to pick up his child, his move to a wheelchair, a meeting with a sex-therapy specialist, his use of a computer-controlled robo-voice (named "Paul") after his vocal cords fail -- is met with dejection, then mordant resilience. Toward the end, the filmmakers ask him what he would have told himself if he knew what he now knows. "Have more sex on film," he says.

"So Much So Fast" glints with the hard nuggets of detail that come from sticking with a subject over time; the directors get so close to the Heywoods that Stephen can snap at Ascher, "Don't tell me how to move my wheelchair," the way you would to a hovering friend. Do they get too close? If this were a documentary about a larger topic, the filmmakers could be accused of losing all journalistic objectivity. Here it serves them well, and, anyway, you sense they have no choice but to love Stephen with every foot of film at their command.

"So Much So Fast" touches on matters important to the medical community and it's a portrait of an entrepreneur fighting both God and "the bastard" that is Time. Mostly, though, it's about one human being who refuses to let the sun set. Eight years after he was diagnosed, Stephen Heywood soldiers on.